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 Is this strange event a symptom of Lewy Body? 
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Joined: Mon Sep 03, 2012 9:30 pm
Posts: 5
Post Is this strange event a symptom of Lewy Body?
My 63 year old husband has been tentatively diagnosed with LBD but I wonder if this strange "incident" fits the diagnosis. Three (3) months ago he was having memory problems, some confusion and some hallucinations but generally doing ok. Then he began to get more confused, ie, tried to put his shirt on as pants and progressed to needing total care. He could not state the year, the President's name, etc. He had difficulty walking and held onto the wall because he was convinced that if he let go, he'd fall off a precipice. His doctor put him on Dilantin (anti-seizure drug) and was already on Namenda, Lamictal and Cymbalta. He gradually got better after about 3 days and this hasn't happened since. The dr said he doesn't know why the Dilantin helped but that it likely "walled off" the part of the brain that was "misfiring". I have read that flucuating cognition is a feature of LBD but to this extent and for days instead of minutes or hours? Thank you everyone for letting me share; it is very comforting to know there are people who really understand. Meddie

Wed Sep 05, 2012 8:59 pm

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: Is this strange event a symptom of Lewy Body?
Hi Meddie, welcome to the forums. Yes, the confusion can last for days. especially if there is an underlying infection. This is what usually happens with my mom. Usually she is very high functioning ( although she sleeps a LOT!), so when she starts hallucinating and getting more confused the first thing I do is check her for a UTI, as this is what usually causes her cognition to deteriorate. Once we get the infection treated she quickly returns to her baseline. It isn't always a UTI, sometimes she has a cold or some other small affliction. but it's usually the urinary tract. Also, any medication changes can throw her into a tailspin, so we're extremely cautious with any meds changes.
Again, welcome and good luck, Ellen

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Thu Sep 06, 2012 10:29 am

Joined: Mon Sep 03, 2012 9:30 pm
Posts: 5
Post Re: Is this strange event a symptom of Lewy Body?
Thank you Ellen. I was hoping to hear that LBD "episodes" don't last for days but in my heart I guess I know better. I'm fortunate that he is doing so well at present so I'll remain optimistic but realistic and will keep reading and participating in the forums.

Thu Sep 06, 2012 8:53 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Is this strange event a symptom of Lewy Body?
Hi Meddie - so sorry about your husband. My observations of my dad were that he could have some pretty serious symptoms that could last for minutes, hours or days. His condition was steadily downhill, but along the way there would be times where he was "better" mentally, emotionally and/or physically. They were always a nice surprise but not very long-lasting. The best thing I can tell you is "expect the unexpected". This is a disease with so many differences between people, how they react to meds, seeming to go back and forth between stages, you name it. It is pretty unpredictable in many ways, and I think that makes it even harder for the CG because you never know what to expect. Sending you a cyber hug. Make sure you have lots of support to help take care of YOU too. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Sep 18, 2012 8:49 pm
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